On the Outside

People think they know you. They think they know how you're handling a situation. But the truth is no one knows. No one knows what happens after you leave them, when you're lying in bed or sitting over your breakfast alone and all you want to do is cry or scream. They don't know what's going on inside your head--the mind-numbing cocktail of anger and sadness and guilt. This isn't their fault. They just don't know. And so they pretend and they say you're doing great when you're really not. And this makes everyone feel better. Everybody but you. "

Digital Version of book

Here is a link to the book I made for my fellow widowers. They will get a hard copy.

http://www.youtube.com/watch?v=V5eUfLJ-g20

Disease

The medical community needs to stop doing stem cell transplants until they can figure out the aftermath. This is from the mother of a 10 year old boy. He had a stem cell transplant, and now has skin GVHD, scleroderma like GVHD, lung GVHD. He had his transplant at 5, and for 5 years he has struggled with one complication after another. His life is his disease.

After another long day at Clinic Monday
getting platelets & IVIG
and having to cancel OT & PT because getting the blood products took so long
that Ryan's therapy times came & went
while he was still hooked up to IVs
Ryan quietly sat at our dinner table after school
with the most down trodden expression on his face.

I asked him what was wrong.
He just shook his head.
Then he whispered, "It just isn't worth it."
He turned his hands over as much as he could to show me
where another huge blood blister had pooled the night before while he slept.
His eyes were vacant and he just looked down.